My Melmoirs

From the moment I woke up this morning, my intuition was speaking to me loud and clear. It was telling me that there will be no surgery this Monday and that that's a good thing.  Luckily I haven't had any hemoptysis all week, but I was still very unsure what was going to happen up until yesterday. I spoke to my team this morning and they agreed that it was best we cancel the embolization for now and watch and see what happens from here. I'm still on IV antibiotics and will be for about another 2 weeks. I've still got a ways to go, but  I'm also very lucky that I turned the proverbial corner today and felt better than I've felt since I've been back home.  I am completely at peace with postponing the embolization...now quick, knock on anything you can find :)   

It has certainly been an interesting journey since my last post. First and foremost I am home with my boys...for now. There's a lot of ground to cover so I'll try summing it up to the best of my ability. The Physical After the consult with my IR doc last week about whether or not to do another embolization, he was leaning toward yes for a few reasons. While there is no clear cut answer as to whether my pulmonary bleeding is being caused by infection or anatomy (enlarged blood vessels) he and I are both thinking anatomy. The primary reason for doing an embolization is to prevent a larger, more serious bleed that could possibly do a lot of damage, so one thing is certain: it's not a matter of if I have another embolization, rather  when . I can admit that maybe I was a little overzealous with the aggressive resumption of chest PT and nebs--both did their job of shaking things up and getting junk out--but maybe a little too well. It really aggravated my lungs/airways and...

My favorite story from today: This afternoon I was chatting with one of the most lively, charismatic medical assistants I've ever met. Her job here at the hospital is to take patients' vital signs and assist the nurses. It may not be the most glamorous job, but she loves it and she takes noticeable pride in it. She and I hit it off from the moment we met. Despite being 12 years my senior and the very different paths that have lead us here, she and I have discovered the most unlikely similarities and values. What started out as comical banter about her choice of Hollywood heartthrobs somehow took a u-turn into a much more meaningful direction. We began talking about how scary it was for her to move to this country--to NYC of all places--from Haiti at 13 years old. She was petrified to move to a country where she didn't speak the language, didn't know her way around, and where she looked so different--and would be severely bullied because of it. One day, at 13 y...

I am happy to report that my tunneled line placement went well yesterday and I arrived in my 'hotel' room late last night. Luckily they were able to start my IV antibiotics right away and my blood work looks good. Without going into too much detail, I'm in a bit of a tricky spot here: What helps my lungs stay healthy and clear mucus (chest PT and nebs) can increase pulmonary bleeding once it's started, no bueno. In an effort to stop my lungs from bleeding, I've had to cut way back on both chest PT and nebs for a while now, so it's been like a wild spring break for all of the bacteria and mucus in my lungs. To put the kabosh on the party and get my lungs healthy again I have opted for an aggressive resumption of chest PT and nebs, which could trigger another bleed, but I don't think it will. I'm trusting my gut here. So far (knock on wood) I haven't had anymore bleeding from my lungs since last Sunday and the team and I are hopeful th...

Exhale... Unfortunately my lungs have continued to bleed ever since the CF walk--even despite being on 3 oral/inhaled antibiotics and prednisone (steroids). So it is with a heavy heart that I will be heading into the hospital to start another round of IV antibiotics this Wednesday. I'm not going to sugarcoat it, yesterday and this morning I was pretty bummed. Not about the IV antibiotics--that just comes with the territory--but rather needing them again so soon. I was  just  on them back in March/April and had such a great CF appointment less than one month ago, so this feels a little bit like a blindside.  Most of my sadness actually had to do with my little guy though. Myles is a pretty empathetic little dude and well-developed emotionally for his age, so my gut has always told me to keep an open, age-appropriate dialogue with him. I haven't hid much (and this kid asks A LOT of questions!) but I have tried to spare him the horrific visual of his mama coughing up b...